[ The ROAR Ep. 9 ] Gene Therapy updates and community action plan

🎙️The latest episode of the ROAR is here, full of exciting updates and real ways you can help move the needle for the CASK community.

https://youtu.be/X3DoyBRXUoU

Here’s what’s inside:

🧬 What recent progress in gene replacement trials means for our CASK kids and why it matters

https://youtu.be/_wZ3-GUuyBc?si=A6ZcqCiNKCgj7yS2

🧠 A spotlight on the 2nd CASK Scientific meeting - collaboration for acceleration plus a deeper look at cerebellar degeneration

🧪 How our sweet CASKies can participate in sample collection for the CASK biorepository hosted by COMBINEDBrain and the biomarker study

https://www.projectcask.org/cask-assets

💛 Why developing therapies takes more than just funding studies and what we all can do

https://www.citizen.health/partners/project-cask

🌊 How families can Make a Splash for CASK this August to advance breakthroughs our kids urgently need

https://givebutter.com/Liocorn/join

🗣️ Why now’s the time to contact your senators and help protect Medicaid for rare and medically complex kids

https://everylifefoundation.org/rare-advocates/take-action/

🗓️ And how we’re building toward CASK Gene Awareness Day on July 15, a moment to raise our voices together

https://www.twibbonize.com/profile

Get ready, get set and ROAR! We may be rare, but together we’re loud, loving, and unstoppable.

🎙️ Listen here: https://youtu.be/X3DoyBRXUoU